The Interconnection Between Health & Independence for People with Autism and I/DD: One Researcher’s Efforts to Highlight the Issue
As more people with autism (ASD) and intellectual and developmental disabilities (I/DD) grow into adulthood, parents and professionals are discovering that independence in living and job attainment/retention are becoming a big challenge. With the lack of opportunities for experience, education, and resources in these areas at an early age, people with ASD and I/DD are not being set up for a successful adulthood. One area that is directly affected, and is interdependent with each of the aforementioned areas, is health. I believe more independence opportunities, combined with a focus on health and wellness, can create more accessibility to successful independence in adulthood.
This paper is a compilation of studies and findings conducted by James Rimmer, Ph.D, in a three year time span beginning over a decade ago, combined with related studies, statics of diagnoses, and my conclusion for a successful path forward with this issue. James Rimmer, Ph.D has dedicated the past 25 years of his professional career to develop programs and research issues related to health and people with disabilities. Although most of the articles in this paper date back to around 10 years ago, Rimmer’s findings are still relevant today (2018) as obesity rates continue to rise and quality resources are still either nonexistent or not easily accessible for those with ASD and I/DD.
It’s important to note that the center of the issue is not about weight. Weight does not define character, value, or any other important human quality. But, obesity does come with alarming health concerns, and with this population being most affected, it’s important it’s addressed.
“A major emphasis in healthcare today is health promotion and disease prevention driven, in part, by the increased prevalence of childhood overweight and obesity and decreased physical activity levels among children. Children and youth with special health care needs (CYSHCN) are at an increased risk for obesity and inactivity compared to their peers with typical development” (Rimmer 2009).
Rimmer proceeds to note two significant factors related to this imbalance:
“CYSHCN may have physical, cognitive, and/or emotional conditions that limit their abilities to be physically active, which may increase risk for overweight and obesity.
Health promotion strategies for CYSHCN may not be addressed in primary care or in rehabilitation services due to time constraints and competing chronic and/or acute medical needs.” (Rimmer 2009)
So how are health and obesity related to independence?
- “It is especially important to promote healthy weight in CYSHCN because chronic secondary conditions accompanying overweight and obesity may lead to health problems that limit independence.” (Rimmer 2009)
- “What is particularly alarming is that adults with I/DD residing in the United States in smaller, less supervised settings (e.g., group homes and family households) have a significantly higher rate of obesity compared to other countries and those living in larger and more supervised settings (e.g., institutions). These differences support the theory that the environment appears to exert a powerful influence on obesity in this population. Obesity presents a substantial threat to the livelihood of persons with I/DD and may have an effect on community participation, independent living, and healthy years of life.” (Rimmer 2008).
Contrarily, it can be argued that more supervised settings inhibit independence and individuals within those settings may be served smaller servings per meal without being given a choice. Either way, it's shown that independence and health affect one another.
Education, exposure, and opportunities are key components of an independent and healthy living environment. If these three areas are embedded into one’s environment with the promotion of health and independence choices, the individual can then have the opportunity to make an informed choice and one from direct experience. In my professional career, I have observed the more exposure, accessible information, and opportunity for choice individuals have, the more likely they are to be active in their own health and independence - shifting these decisions into preferred habits.
2005 Surgeon General Call to Action
The severity of this issue was highlighted in the 2005 Surgeon General's Call to Action by Richard Carmona to: Improve the Health and Wellness of Persons with Disabilities.
“This call to action encourages health care providers to see and treat the whole person, not just the disability; educators to teach about disability; a public to see an individual’s abilities, not just his or her disability; and a community to ensure accessible health care and wellness services for persons with disabilities.” (ICDR)
Goals three and four of his Call to Action highlight health and independence and they read as follows:
- “GOAL 3: Persons with disabilities can promote their own good health by developing and maintaining healthy lifestyles.
- GOAL 4: Accessible health care and support services promote independence for persons with disabilities .
Health and Nutrition
Many people, including Rimmer, argue more physical activity is needed to combat this issue. I agree with the addition that diet is of even more significance than physical movement, initially and for long term sustainment. In the last few years, more and more research has begun emerging related to diet, processed foods, pesticides, food intolerances, gut-brain connection, and so much more, finding direct negative effects on physical and mental health, behavior, sleep, and the list goes on. Being active is very important, and fueling our bodies with real foods must be a priority in order to achieve physical performance. The addition of attention and effort in eating real foods is highlighted by a finding from Quartz: “For a third year in a row, a majority of American adults are exercising as much as their government recommends. But that does not appear to be curbing the nation’s obesity rate, which in 2017 reached an all-time high” Quartz.
To learn more about processed foods and how food directly affects health, go to PubMed and search for anything related to the above mentioned factors - it’s all there.
Environment, Accessibility, and Supportive Resources
“It is important for health professionals to recognize that the substantial health disparities that exist between people with and without disabilities requires greater attention to establishing disability-friendly environments that reduce architectural, programmatic, and attitudinal barriers that make it difficult for them to engage in self-initiated health promotion practices” (Rimmer 2008).
Few resources are available for these populations, their families, and the professionals supporting them. Access to healthy options should exist for everyone, and unfortunately there are not that many options for those with I/DD in 2018. Our hope at Healthfully Independent, Spectrum Yoga, and Modern Mom Revolution is to begin the shift in ending the barriers, fueling the discussion Rimmer ignited years ago, providing access to purposeful resources, and to support choice in health and independence in one’s life as these are rights and significant matters in which everyone deserves informed choice.
Rimmer has dedicated his career to highlight these issues and solve them. Because of his work, we have a foundation to work from and a goal to move towards.
As parents and professionals we must continue to question the status quo of intervention, accessibility, and opportunity. We must ask ourselves “are we giving our children, our clients, our students enough education? Is that education accessible to each individual? Is it presented in a way each student can absorb it; and, are we giving them enough options and resources to prepare for a healthy, independent adulthood?”
We have a lot of work to do to be able to answer “yes” to each of these questions; and, we mustn’t look to do it alone. We can no longer afford segmented approaches, techniques, and practices. We must integrate and collaborate for the millions of people who do not have access to choice in their own health and/or independence. So that each person can live in informed choice, health, and happiness and lead fulfilling lives - for the betterment of everyone’s future around the globe.
- Developmental disabilities (DDs) are common: about 1 in 6 children in the U.S. had a DD in 2006–2008 (CDC 2015)
- People with developmental disabilities - 4.6 to 7.7 million in the US. (The ARC 2011)
- People with autism - 1 in 68 children are diagnosed. (CDC 2017)
- From 1997 - 2008, the
- Prevalence of DDs has increased 17.1%—that’s about 1.8 million more children with DDs in 2006–2008 compared to a decade earlier;
- Prevalence of autism increased 289.5%;
- Prevalence of ADHD increased 33.0%; and,
- Prevalence of hearing loss decreased 30.9%. (CDC DD)
- Obesity and intellectual disability. Rimmer JH1, Yamaki K. 2006;12(1):22-7. https://www.ncbi.nlm.nih.gov/pubmed/16435329
- Health Promotion for People With Disabilities: Implications for Empowering the Person and Promoting Disability-Friendly Environments. James H. Rimmer, PhD, Jennifer L. Rowland, PhD, PT, MPH. 2008. http://journals.sagepub.com/doi/abs/10.1177/1559827608317397
- J. H. Rimmer, E. Wang, K. Yamaki, and B. Davis, “Documenting disparities in obesity and disability,” FOCUS Technical Brief 24, 2009.
- Surgeon General Call to Action. https://icdr.acl.gov/system/files/resources/correacalltoactionkeynote.pdf
- CDC. Birth Defects. 2015. https://www.cdc.gov/ncbddd/developmentaldisabilities/features/birthdefects-dd-keyfindings.html
- The Arc. 2011. https://www.thearc.org/what-we-do/resources/fact-sheets/introduction-to-intellectual-disability
- CDC Autism Data. 2017. https://www.cdc.gov/ncbddd/autism/data.html
- Quartz. 2018. https://qz.com/1230097/new-cdc-report-shows-americans-exercise-more-than-ever-but-the-obesity-rate-is-growing/